“GUSTO ko na mag-give up pero parang yung heart ko hindi gusto mag-give up, so that’s why
nag-pray na naman ako, and yung nag-relapse na naman ako sa last protocol, yung New York, down ako pero I felt peace because nagta-trust ako kay Papa Jesus ([On my first relapse] I already wanted to give up, but my heart didn’t want to, so I prayed again. When I had my second relapse, I still felt down, but there was peace because of my trust in Jesus),” said 10-year-old Dezier Grye Daclan, who has been battling a relatively rare type of blood cancer since he was six years old.
“Every time I feel something is wrong, I pray and always say thank you because He has done all good things and He is merciful, and He is so good.”
Spoken without prompts, one could sense the deep faith instilled in the child as he battles a cancer that defied two aggressive treatments and would have reached a dire end had the
Children’s Cancer Institute (CCI) at the Southern Philippines Medical Center, through Dr. Mae Concepcion J. Dolendo’s network on children’s cancer, not laid out a map that matches Grye’s faith with hope.
Grye (pronounced as Gray) was to become the first cancer patient from Mindanao (and possibly, the whole country) to undergo Chimeric Antigen Receptor T cell infusion (CAR T cell infusion) at the Shanghai Children’s Medical Center-Department of Innovative Diagnosis and Treatment (SCMC-DIDT).
Grye first underwent the BFM (Berlin-Frankfurt-Munster) Protocol, a widely used, intensive multi-drug chemotherapy regimen for pediatric and adult Acute Lymphoblastic Leukemia (ALL), focusing on risk-adjusted treatment. The New York Protocol (or New York Regimen), on the other hand, is an intensive, multi-agent chemotherapy and radiotherapy approach specifically designed for children with high-risk ALL to manage early relapse. This was the most that Philippine pediatric cancer treatment could give.
Leg pain, toothache, and ‘mumps’
The symptoms were something any parent would have brushed off as of little concern. It started with Grye complaining of leg pain. Grye, as an active six-year-old, had the habit of climbing up two posts with just his hands and legs, spreading wide to anchor on each post, and then, once he reached a certain height, he’d jump down. Easily, the leg pain was attributed to that. Then came the toothache and the swelling on the side of his neck. But five days after first complaining of leg pain that was addressed through ‘hilot’, Grye could no longer stand, so they brought him to the hospital, where he was confined for two weeks.
At the hospital, it was found that Grye’s white blood cell count was very low, indicating leukemia.
It was a shock for Drexel and his wife, Kimberly Anne, so they sought a second opinion from Dr. Jeannie B. Ong, a pediatrician and pediatric hematology-oncology practitioner at the San Pedro Hospital, who confirmed the diagnosis.
Drexel and his wife were both bank employees at that time, and the prospect of cancer treatment for their only child was beyond their means.
“Baka first chemo pa lang, ubos na aming pera (Our finances can be wiped out with just one
chemotherapy session),” Drexel said, so he asked for advice from Dr. Ong, admitting their inability to pay for such treatment. Dr. Ong recommended that they go to CCI instead, providing them with the medical documents they needed.
That was the first time they heard of such a service for children at CCI, and they were fascinated by the large number of children there; more so when they realized these children receive treatment for free, while their parents just need to sacrifice time and effort by lining up for assistance and document processing. They were attended to right away by Dr. Mark Ranches, then a junior consultant at the CCI outpatient. Grye said he’s now a pediatric oncology fellow in training; the boy knows the goings on in the hospital.
Failed twice
They went to CCI in May 2022, where Grye underwent the BFM for two years. His diagnosis was the Philadelphia-positive (Ph+) B-cell acute lymphoblastic leukemia (ALL), an aggressive, high-risk subtype of blood cancer.
Just as Grye was approaching the end of BFM in 2024, he had his first relapse. Cancer cells were multiplying rapidly in his blood. So, a more intensive treatment, the New York protocol, was outlined. But again, the cancer proved to be more aggressive. Another relapse by the end of 2025. They reached a terrifying crossroad with the possibility of a cure dropping.
But not quite yet, as it seems things were falling in place.
Coincidences and support
First, Doc Mae had met Dr. Jiaoyang Cai when they were both studying under the St. Jude Children’s Research Hospital Global Master’s Program in the United States. Dr. Cai comes from Shanghai Children’s Medical Center (SCMC), where she works with ALL and pioneers survivorship care.
She facilitated Grye’s care with the Innovative Diagnosis and Treatment Department team and helped settle them at the treatment center.
Through their common link, it was easy to reach out to Dr. Cai. Discussions on Grye’s case were ongoing since late 2024 after his first relapse, and he qualified for CAR T infusion; but he was in remission then. It was the second relapse that triggered subsequent follow-up referrals.
The SCMC expressed willingness to help Grye, but only within a very narrow window, given the gravity of his situation and the upcoming Chinese New Year, a very long weekend in China. Dr. Lesley Tiu, CCI Leukemia/Lymphoma attending physician, coordinated referral documentary requirements, and Grye was ready to go!
Incidentally, enticed by the 10-year passport expiration initiated under President Rodrigo R. Duterte, the Daclan couple applied for their passports in 2021, even though they didn’t have any plans to go abroad. They also got Grye a five-year passport for children.
“‘Yun pala ang gamit nun (So that was what our passports were for),” Drex said.
Grye had to fly out and be admitted on the Wednesday before the whole of China takes a break for their New Year celebration, which starts the next day, Thursday, February 12.
Chinese New Year was February 17. Grye’s passport will expire in November 2026, so it is still valid for this trip. With the help of the Chinese Consulate in Davao, Drexel, Grye, and Dr. Cheryl Lyn Diez, SPMC-CCI pediatric hematologist/oncologist, obtained their visas within 24 hours and flew off to Shanghai on the evening of February 11, Wednesday. They were admitted upon arrival, photo-finished.
Doc Cheryl, tasked with accompanying and helping them settle in at the hospital, stayed only a week; it was her first time traveling as the one in charge, she said, and it had to be in a country that doesn’t speak English. It was an awakening, a coming-of-age in international travel for her.
Drex and Grye stayed until March 20 for the complete CAR T treatment. Throughout, the House of Hope Foundation for Kids with Cancer provided financial and logistical support, as it does for all other children with cancer at SPMC.
Compassion in shared pain
Still, it was a strange world. Grye was the only Filipino patient in the whole facility, and communication was a challenge.
Upon admission, Drex had to figure out where and what he needed to buy on the list given to him, so he asked someone, but the person had a very thick Chinese accent, and communication was impossible. A lady, the mother of a patient, saw the exchange and, speaking better English, assisted Drex. She bought what was required and refused to accept payment, saying it was a gift. In their room, shared with two other children, they received a large bag from the Love Foundation containing what they would need: a small blanket, measuring cups, writing implements, a butterfly toy, and other items they would need in the hospital but were not prepared for. In that alone, Drex said, they felt God’s constant presence.
“In simple things, you know that it’s God working through these people, kasi hindi ko alam ang gagawin,” he said.
On the night of their arrival at the hospital, Grye could not stand again, but he prayed for healing, as he is wont to do every night. The following morning, he surprised his father by
standing up. He could already walk. That was a good sign.
Still, it wasn’t an easy treatment for Grye, his veins had all collapsed by then, and a central venous catheter (CVC) was inserted into his arm with a backup CVC in his groin for blood
collection (apheresis), to administer chemotherapy, and infuse the modified cells. CAR T reprograms a patient’s own T cells to recognize, target, and destroy leukemia cells. But the
rapid destruction of cancer cells can release large amounts of chemicals (cytokines), leading to Cytokine Release Syndrome, which Grye went through; his blood pressure dropped, among other side effects.
A new lease
It was iffy for a while, but by the end of the treatment, Grye’s bone marrow showed zero cancer cells, and he had made friends with other children first in his room, then with other cancer patients outside the room, despite not speaking Chinese beyond “Ni hao ma?” and “Xie xie.”
To cap their stay, the Philippine Airlines gave them complimentary tickets for their flight home.
Drex can only shake his head in wonder. He, who had to give up his job to accompany Grye on this healing journey, had just his wife, Kimberly, left to work for their young family, but help was overflowing, including ensuring that Grye could continue his studies through House of Hope’s hospital-based education partnership with Dumanlas Elementary School. These are
details that a family overwhelmed by the long, drawn-out treatment for cancer can no longer think about. But it’s there for the children.
“Papa Jesus, I know na-hear mo yung prayers ko. I know na alam mo yung naga-wait ako sa
right time mo, Papa Jesus, because, yun, may process always. And, amen. ‘Yun lang (Papa Jesus, I know you are hearing my prayers. I know that You know I am waiting for the right time according to Your Will because I understand it’s Your process that is followed. Then Amen. That’s all),” Grye said when asked what he prayed for in Shanghai. Grye will still be monitored for two more years and has some prescription medicines to take, but finally, after four years, he is free of needles.
At the same time, the prayers continue…
(A signed consent has been secured by CCI for this story and photos). SEA